Carers' Seminar - 5 July 2003

 
Issues and Conclusions

 

Question	Results	Outcomes
How does the Lupus Carer deal with their own feelings of loss of expectations?	Learn to live with it Re-evaluate you plans/aims Maybe part-time job Learn to pace yourself - physically and mentally Assess priorities : manage others in family - children manage finances Accept the reality and adjust/explore alternatives Home help - house cleaner etc Get help where you need it : Time off Exercise Mental health Talk to other carers Be willing to accept help Recognise that you need help and talk about it Communicate with other like groups/carers	Accept reality/explore options Learn to ask for and accept help Communicate with other carers/groups etc as support is paramount
Carers of Mothers - How does Lupus and its constantly changing manifestations affect you as a carer? (ie. Changing signs and symptoms etc) (Although we don't yet consider ourselves full-blown carers as yet!)	Emotional rollercoaster - correlated to lupus PT's health Frustrations due to patient's non-sharing of their experiences/fears Sense of helplessness - where patients wear themselves out being independent Limited life-style/activities - indoors rather than beach, gardening Guilty feelings - imposed on carer by patient (and vice versa) Constantly seeking medical advise for different newly pronounced problems eg. gastroenterologist, immunologist, oncologist etc Fearful - re possibility of genetic susceptibility Restricted with regards to what you are/should say/do Optimistic - after attending today's seminar ie. perspective! Confusion - What is a Lupus symptom? What is not a Lupus symptom? Does it matter??!!	Emotional rollercoaster Frustrated Helplessness Guilty Acceptance Be positive and optimistic Learn to accept and limit lifestyle to changing manifestation
What are the communications issues for Lupus patient's carers? COMMUNICATION - What is Lupus?	Child Anger - 2 way Privacy - 2 way Need to have your time and let them know Provide emotional support - 2 way Flare-ups Step back - need to stop the circle Fear Agencies Lack of recognition of lupus as an "illness" - intermittent nature No prognosis - no payment No health-care card - children under 16, over 25 Doctors Don't know (GP) Need to find a doctor that understands Lupus Information on medication and side-effects (chemists more helpful than doctor) books Others family friends doesn't look sick	Child Learn to cope with anger Give each other space and privacy           Agencies Support awareness         Doctors Finding/sharing a doctor who really understands Lupus     Others Different communication issues for family, friends etc
HELP Agencies - How can the Lupus Group assist you?	Help Raise Awareness : General public, family, carers, patient Pamphlet on "what is Lupus" for family/friends How to help your carer - pamphlet Emergency telephone counseling - patient and carer - suicidal - Lupus Help Network, support group for carers, patients - young Mentor program What clinics? How access?	Support Lupus Group To help in raising awareness Increase networking opportunities Facilitate mentor programs Develop carer pamphlet
What techniques do you use to stay positive when things get difficult?	Immediate response sometimes volatile : take a breath, Choosing the right words Listen, allow the rage or talk, try to understand the problem so you know what you're facing Give the carer quality time, of yourself Talk in a controlled calm way in response to patient even if they are angry so you defuse the situation Regular conferences between carer and patient To bring up issues and final resolve when you are not tired or too busy Approach gently, perhaps a hug or touch on the shoulder, speak directly and calm, tell me what is happening - will we discuss this now or plan it for later A massage, to release tension that has occurred due to a problem, can ease the stress so that communication is possible. If you are not allowed into their personal space, say "kick your shoes off and I'll give you a soothing foot rub". Looking at the difficulty - finding resolve and following the process to the outcome being in some way positive. This strategy may be difficult, however in time will become easier.	Choose the right words with calmness Step back and take a breath before communicating Spend time talking in a crisis Massage Look at the difficulty but stay positive Talk to each other regularly

 

Disclaimer :
The Lupus Group of W.A. (Inc.) does not recommend or endorse any products, drugs, treatments, procedures, medical or health professional in this article. We suggest you discuss this information with your doctor or specialist.